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09 October 2010

There are many things that seem wrong about today. Someone who was just born three weeks ago shouldn’t need to be eulogized. Caskets shouldn’t come in a twenty-four inch length.

But here we are.

When we first found out we were expecting a baby, I took for granted that the experience of preparing for and welcoming our first child would be like those of others we knew: getting a nursery ready, picking out names. Installing the car seat, assembling the crib, coming home as a family for the first time. But our experience became something entirely different when we found out we were expecting Ewan with a broken heart. From that point on, everything about our experience was entirely other.

But it taught me to cherish and celebrate every moment. One of the ways I did this throughout my pregnancy, and at least once after his birth, was that I wrote letters to Ewan. And so for my eulogy today, I have another letter for him.

3 October 2010

* * *

Dear Ewan,

There are a lot of difficult things about this day. I don’t know how to explain to myself – let alone anyone else – how it is that the sun keeps shining, the birds still sing, and the earth manages to continue rotating when a loss as shattering as this one occurs. It seems that all creation should stop to pay its respects to your passing, give us all a moment to weep and then to catch our breath. It seems that the sky should go black and the earth rip open with a loud groan. Since you left us, I feel as though the fog has rolled in and wrapped itself around me.

It’s not often that I struggle to find words. But since we said goodbye to you late Sunday night, I can never seem to find the right ones. There are words like: sad, grieving, angry, upset, confused, and lost. There is a rightness about them, but as words, they are far too small for this. They aren’t nearly infinite enough.

It was late in January that we found out you were coming to us. Since the moment I saw the first positive pregnancy test, I held close to myself the knowledge you were with me. Long before I could see you or feel you, I wondered at who you were. I remember hearing your heart beat for the first time. I remember sitting at work and feeling the first little flutters inside that were evidence of your life. I remember the day we found out about your broken heart.

Before we knew what was wrong, it was clear to us the doctors weren’t seeing what they wanted to see. And then they told us about your heart. We were flooded with information and suggestions about how to handle it. Instead of “baby,” they called you “the fetus” and used phrases like “terminating the pregnancy.” My instinct was to protect you, to fight for you. I felt like leaping from the table and ripping the words from their mouths.

In the days that followed, we wept for you. We wept for the fight you had ahead of you, for the unique challenges you would face, for the unfairness of it all. The knowledge of your broken heart heightened my appreciation for everything I experienced: every kick and movement, the increasing roundness of my belly, and even the sickness I felt – it was all celebrated, it was all treasured. Not a moment went by that we didn’t rejoice over these signs of life in you.

I told everyone I could about you and your heart. Once upon a time, I would have been embarrassed about doing such a thing. I would hate to take up people’s time or inconvenience them or make them feel uncomfortable. But I felt like everyone had to know about you. And so before you were even born, I set up a blog all about you. And pretty soon, hundreds of perfect strangers from all over the world had joined us in praying for you, in cheering you to victory – and the same people began to love you as we did.

Your personality was evident very early on. It was so clear you were determined to stay nuzzled up against the right side of my belly. When you stretched there, I looked particularly lopsided. This gave many people (including me) a good laugh. One friend suggested that she thought you’d be a little snuggler, and I liked the sounds of that. It was clear to us also that you had no small amount of fight in you. I will never forget the morning that I lay in bed in that space between asleep and awake and you woke me, kicking hard with both feet rhythmically and repeatedly like a snare drum. I remember watching my belly as you got bigger – you entertained us all by showing us your feet, your knees, and your elbows, rolling and squirming all the while, sometimes for hours at a time. I would always stop what I was doing when you moved around like that. It comforted me to feel you, to know how active you were, to know you were alive and thriving.

We tried to do all the normal things that people do when getting ready for a baby: we registered for gifts, bought clothes for you, got a nursery ready. We knew your condition was severe, but we were deliberately hopeful. We talked about things we wanted to do with you, things we could do as a family, things we wanted to teach you. We painted your room, made your bed, set up a changing table. We were ready to welcome you.

Two nights before you were born, I couldn’t sleep. I knew your arrival was close, and I was grieving again for what you would have to face – how scared I was for you, how innocent you were and how I hated what you would have to suffer just to remain alive. I knew that as long as you were growing inside me, you were safe. I could protect you. I couldn’t stop thinking about how I would have offered you my own heart if I could. We always wanted only you Ewan, but we grieved for that broken heart. Nothing about it was fair, and I cried for the injustice of it all. All I wanted was to bring you home, to be your mother, and to love you.

Over the course of my pregnancy, I would hear other mothers make minor complaints about parenthood: the screaming in the middle of the night, diaper mishaps, fatigue, spit-up, and the like. I hated hearing it. I wondered if they knew how fortunate they were to have that. I hated it when people who didn’t know any better said things like, “You must be so ready to be done,” not realizing I would have stayed pregnant forever if I could.

And then you came. I was so certain I’d go past my due date, but you came just over two weeks ahead of it, doing things your own way just as we knew you would. There was no time to be afraid, only to focus on bringing you here as safely as possible. And so I labored through the night and into the early hours of the morning. Just before 10 am on September 18, they placed you on my chest. You didn’t wail as I expected – you simply mouthed gentle cries as if to say, “It’s too bright out here.” Knowing our time together like this would be short, I studied your face and touched every bit of you that I could. I will never forget how you looked at me, how your eyes focused on mine. I knew you, and in that moment, I was certain you knew me. You were every kind of beautiful. It was so good to see you, and impossible to comprehend how there could be anything wrong with you.

And then they took you away.

That was the only time I would see you without the permission of nurses, without slathering my hands in Purell, without oxygen tubes and probes and monitors beeping. Later that day when I finally got to see you again, you looked at me as you had before. You held my finger and I talked to you. I sang the same songs that I sang when I was pregnant with you. I put my hand on your chest. I studied the feel of your skin and your hair. I adored your little dimpled chin. I didn’t want to leave you.

It’s difficult to recall the next two weeks, not because I can’t remember them clearly, but because we had so much hope for you and had to watch you suffer with repeated tests and procedures that no little one should have to endure. It was clear to us and your nurses that you were both tender and fierce. I remember watching as different procedures were performed, how you held the ultrasound tech’s ring and pinkie fingers as she performed an echo of your heart. I remember seeing how angry you got when they put the CPAP on you – how you straightened your arms and stiffened your legs and screamed. I cried for the rest of the day. I wanted so much to take it all from you, to make it all stop. I felt so helpless, and I kept apologizing to you.

At some point, I determined that the time I spent with you in the hospital was time I was going to focus on simply being your mother. Nurses and doctors were plenty, but I was the only mama you had. I spent every moment by your bed stroking your hair, touching your hands, talking to you, singing to you. The day before we said goodbye, you looked at me like you always did – with your intensely soulful, piercing gaze. You moved your mouth as if you were trying to say something. Oh, how I adored you. I soaked in every second that your eyes were locked with mine. You were impossible to leave.

When we went to your room the next day, the doctor updated us on your condition. On top of the heart and lung machine, and the kidney support machine, we learned you had acquired a serious infection in your blood. Your intestines were failing. You hadn’t opened your eyes all day. You no longer responded when touched. As hard as you fought, your body was failing you.

We called family and close friends. We told them it was time to say goodbye. If you had to leave us, we wanted you to be surrounded by those who loved you and had cheered you on. There would be no middle of the night phone call saying you were gone. We would be the ones surrounding you and loving you, free of machines and tubes and wires and tape. And so we took several hours and held you, sang to you, prayed over you. I got an unobstructed view of your face for the first time since your birth. And then when we were as ready as we could be, the final machine was shut off. It was within minutes that you left us. You came into this world in my arms, and that’s exactly how you left, too.

Though you never spoke a word and never left the hospital, you changed the world forever. You had a tiny, broken body and such a magnificent soul. I’ve gotten hundreds of messages from all over the world – from people I’ve never met or known – about you, Ewan. I hear from perfect strangers about how your broken heart somehow managed to soften and heal theirs. Mothers tell me about their determination to hold their children longer and tighter, to be more patient and loving with their little ones because of you. People tell me about how you taught them to be grateful, even for the things that cause them pain. I hear them tell me how they didn’t know what it was in particular about you, but they grieved with us as deeply as if they had lost a child of their own. I hear people tell me they found their faith in God again because of you. You, dear Ewan, shone brightly in a very dark place.

Dear Ewan, I am numbered among many who will be better because you lived. Your time with us was short, but your reach was enormous. Though I will miss you forever, though the grief that comes from losing you will continue to turn me inside-out – though I will continue to have days where I will ask how the sun could shine, the birds sing, and the earth continue to spin – I will hold close to myself the knowledge that while loving you broke my heart, it healed it too.

59 comments:

I am so sorry for your loss. Your letter to Ewan is beautiful but again, I am sorry...you shouldnt have to write it. You are correct, they shouldnt have a need for a 24 inch casket. I can only imagine your pain and grief..please know, I am praying for you and your family. I know that really doesnt offer any measure of comfort, but its all I know to do.I cry along with you, even though we have never met.

I cried for Ewan today. Your letter to him was beautifully written just like the others you have written and shared with us. I know how deeply you loved him and I am sure that he knew that in the short time he was here.Praying for much comfort in the days ahead without Ewan here.

Kirsten, you and James have been on my mind all day. Please know that I honored Ewan by lighting a candle and my children and I said a prayer for him. My heart, and the spot inside it that once only belonged to my children, is forever more changed by a little precious soul that I never got a chance to meet...Ewan.

You have taught me so much. Ewan has taught me so much. I hold my kids tighter tonight because of what I have learned. You remain in my prayers, and my heart weeps for you in your grief. I cannot imagine, but I pray God will carry you through.

I am so sorry mama. This letter is beautiful. It just like it says I appreciate my kids so much more after reading a story such as yours. We will be praying for my family and lighting a candle for your sweet little boy tonight.

A beautiful letter. Ewan was so lucky to have you. Russ and I have both been blessed by your words, and by the fight of your lovely boy. We'll be keeping you, James, and your family close to our hearts today and as you mourn. We wish you peace, healing, and hope.

Your words in this letter to your son are so beautiful. Thank you so much for sharing your life and your son with us. Ewan knows he is loved by his mama and papa.Although I have never lost a child, I have gone through a senseless death that left me feeling like the world ... the entire universe ... should have just stopped. That I can understand, even if for a completely different reason. However, as a mother, I can only shudder as to how much worse it would be to lose one of my children. They are grown ... probably slightly older than you ... I love them SO much and your story has made me love them even more. We are praying for you that God will hold you in this time of intense grief.Sue & Wayne Rasmussen

I have thought of you,your family and Ewan today.. I cry as I read this. I know how hard it is to do this for your own child.. we shouldn't have to bury our kids.. I'm so sorry for your loss, for your pain..I am holding you and crying with you from s distance.

so good to read the eulogy and talk to my sister to hear the details of the difficult and grievious day. we are mourning with you. it breaks our hearts. you have become a family name in our household and we consider it a privilege to lift you up to Jesus. much love from our home to yours. the felmleys

I felt your love each and every dayBut in your womb I could not stay.I’ve got my wings from Heaven above,Now I’ll keep you safe and share my love.When tomorrow starts without me,Don’t think we’re far apart.For every time you think of me,I’m right here in your heart.I know how much you love me,As much as I love you,And each time you think of meI know you’ll miss me too.God didn’t take me cause he’s mad,He didn’t send me to make you sad.But to give us both a chance to beA love so precious…don’t you see?Until the day you join me here,I’ll love you Mommy, dear.Each breeze you feel and see,Will bring love and kisses from me,When tomorrow starts without mePlease try to understand,That an Angel came and called my nameAnd took me by the hand.I know no matter where you’ll beYou will hold me in your memory.Nothing but time will help these days go by.You just need to remember,I’m your angel in the sky…

I cry as I read this. Im so sorry for your loss. Over the last 10 months I have been reaching out to familys that have CDH in the family. No I do not have a child with a CDH only a Murmer. They thought my Daughter had one during 4 ultrasounds and a specialist but it was nothing. I know that fear but that fear became a reality. Im so sorry. His story will be shared by my family to others. CHD need to be talked about more and mothers aware. Thank you for sharing this it has made me more thankful and I look at today as it would be could be my or someone I loves last. you are a beautifal wonderful mother. Many prayers <3 <3 Amanda

You don't know me, but I am so thankful for your generosity in sharing about Ewan and what you have learned from him. This last letter is one of the most beautiful things I have ever read. You have a great gift for expressing yourself in writing. Even when no words can quite express the magnitude of what you are going through, you have managed to convey your thoughts and feelings very vividly. God blessed Ewan with very special parents. And He has evidently gifted you with a particularly strong gift for writing and I hope you never stop. God bless you.

Another stranger...another heart touched by Ewan, and more tears shed for him and for you and James. It just isn't fair. I know that seems cliche, but it's the bottom line. Many, many prayers from this stranger as well--prayers for comfort and some sense of peace... eventually.

Dear Kirsten and James,My heart aches for you and I am edified by your faith, your trust, and your most powerful witness to the power of God, to the courage and heroic virtue you are communicating for the world to see and read! As you well know, heroic virtue is what Saints are made of. White Martyrdom and Dying for Christ are agonies that also belong to the Saints. You and James are experiencing both. Suffering interiorly and Dying to self for the love of God, for the love of Ewan and for the love of each other. Thank you! Suffering is the heat that melts us into Christ. You can be confident, that like Our Blessed Lord, you WILL experience an Easter Sunday and you Will hold Baby Ewan for all eternity in Heaven. It would do us all well to consistently focus on things eternal. We were all made for Heaven! Ewan is already there, to be your personal intercessor before the throne of God! All Glory to the King! Much love and prayer. My heart is with you.

I feel I missed out on many "normal" aspects of pregnancy as well. I didn't want a shower, didn't want to decorate the nursery or pick out a crib because as hopeful as I was, I didn't think my daughter would make it here.

She is now 8 months old and although times are tough right now as I am battling some health issues and my sweetie works 50+ hours a week and I am home with our girl, you remind me to be thankful for the exhaustion, the stress, the chaos, because it means she is still here and so am I.

i wish i could erase all of this for you kirsten...push a rewind button and take you back to those hopeful moments when you still held ewan and the possibility of a future with him. i'm hurting so much for you.

remember when i wrote about God "drugging me" when the pain got too intense to bear? i'm praying that he gives you the mercy of that kind of anesthetic when the pain threatens to overwhelm you. i'm praying that it allows you to heal and rest.

I believe Ewan was greater than all of us. Now he is the wind and the sun and he will continue to touch you, his dear mama, and remind you of his love daily -- with breezy kisses and warming enveloping hugs. He will always remind me to be a better, more humble person. Love Christa

I have been following you since I heard you were in labor with Ewan as I waited for the Beth Moore simulcast to start early on the 18th. We all prayed for you then. You have a lot of support coming from Bellingham. I can not tell you how much your story has affected me. I had a baby boy in June and I remember Ewan every day when I hold my son. I appreciate every moment now, instead of complain about how tired I am or how he is difficult to get to sleep. Instead I cherish the fact that I get to be his mom. His name is Nathan which means "God given" and I totally believe he is a gift from God. Thank you so much for inspiring me to be a better and more patient mother. I am grieving with you. May God continue to give you strength and comfort. I will continue to pray for your family. God bless you.

"Prayer are the stairsWe must climb every dayIf we could reach GodThere is no other wayFor we learn to know Him to Lighten our burden of care .."

I'm so sad for your loss, i lost my boy in 2001 and never had the chance to meet him as the doctors took him away and would'nt let me see him, i was only 7 months pregnant so i know that losing a child is devastating and forever i will be asking questions, my heart will be with you just know that in this world YOU will always be a MAMA.

Kirsten and James, I just came upon your blog four days ago. While I have not had a child with a broken heart, I have lost a child. The pain is immense, and the struggle for acceptance is a journey I never thought I would be on. I am a private person yet I started a blog to tell her story. My heart dictates the words I write. Our stories are different, Kirsten and James, but our pain speaks the same language. Our family will be attending a Gift of Life ceremony today. I will take thoughts of your precious Ewan, and all the other tiny warriors who battle so valiantly for life. I will pray for all of you. I will join my heart with yours as you begin your journey, a journey no parent should be on. God bless you.

I remember wondering how life kept going on as well. Its been 3 months today... and the world is still turning, and I still wonder why. Nothing is ever normal again... but there some better days, some bad.

Just beautiful. From one grieving Seattle area mama to another (I'm now down in the "deep south" - Australia), just beautiful. My little Evan is probably your little Ewan's new friend and showing him and Joshua around Heaven. My heart goes out to you. It's been 4 months and 3 days since Evan was born and almost 4 months since he died, yet the grief is still fresh like it was yesterday.

That was a beautiful letter. Cried the whole way through it. :( We took a moment to stop and pray for you and Ewan yesterday. I pray that God brings you comfort and wraps His loving arms around you all during the difficult days ahead.

My heart physically hurts for you. Because of you and beautiful baby Ewan, I am joining the fight against congenital heart defects. Your story has given me a different outlook on life. And I could never thank you or your beautiful son enough. God Bless you and your family. Praying for you in Oklahoma,Erin

I have two boys myself and as I read your letter to Ewan, I remembered my pregnancy, their birth and how quickly they grow up. What is it about memories? How can one memory stir up so many different emotions inside of us? They're not of the present time, but somehow they are so very real!

I am grateful that you both had the honor to meet Ewan in person...to see him, touch him, love him and even let him go. MEMORIES... Think about it...that in itself is LIFE!!!

It breaks me that you have to write this. I'm not a parent yet, but I plan to start trying soon, and honestly this is one of my worst fears. I don't think my family has every truly appreciated what a blessing it was that my nephew was born healthy, despite being 5 weeks early.

Ewan's physical heart may have been broken, but his metaphorical one was certainly strong. I believe he's what my culture calls an "old soul", a soul with a lot of experience. And much like little Nkosi Johnson changed the world before his death at only 11 of AIDS, I believe Baby Ewan has changed the world too, because he was just as much a fighter, and he touched my heart the same way.

Although we've never met I feel like our lives are connected. I to am a mother of a child with a CHD. I know how special each moment of each day is. I know the agony of watching your sweet little baby fighting for each breath and endoring more pain than most people will ever endor in a life time.

Your strength was given me renewed faith and energy to continue to help my daughter in her fight that she continues to fight. Her strength is amazing and her determination unwavering.

I have spent the last 10 months terrified about what is next and if she will be strong enough to make it through. But after reading your story I know that everything my sweet girl has endored has a much bigger purpose than just surviving and fighting this.

What a beautiful tribute to your son. What an amazing little boy. Thank you for sharing your story in this beautiful space. I want to crawl in bed with my little one and hold her closer. My heart aches for you Kirsten and James.

I can only imagine your pain. I am deeply sorry for you loss and I have followed you along this process from the day he was born. I have cried along with your writings and I wish you strength. I have prayed for not only Ewan but for you and your family. May you learn to carry this with you and always remember that beautiful little boy you brought into this world.God bless you and your family.

Your letter to Ewan is beautiful, but I could only read the first paragraph before tears overwhelmed my eyes and I couldn't see to read. My daughter was born with HLHS, but she's still here. I wish I could hug you - your so brave.

Dear James and Kirsten,I have been reading your posts and the eulogy you wrote for your precious little Ewan. I look forward to the day when I have the privilege of meeting your son. It is a comfort to know that his broken little heart is mended, he is whole and no longer in pain. That his every tear has been wiped away and he is resting in his savior's arms. Wow! Thank you for sharing your very personal story - I will never forget either of you. Neither will I forget Ewan. God bless you.

A friend of mine's nephew was born last week. Soon after his birth, thanks to a good nurse, they discovered he had a heart defect He is post surger and on the mend. You can read about their family: http://livelyleavitts.blogspot.com/

Somehow today I came upon your blog and have read much of Ewan's story. You are a beautiful writer and mother. Thank you for sharing so eloquently his story and yours.

I am not sure what your faith is but I believe you will be reunited with your son. You won't have to miss him forever, he is always near you and will greet you again someday. What a glorious day that will be. Families are forever.